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RHABDOMYOSARCOMA

dana1969
Posts: 1
Joined: May 2001

HI,
I AM LOOKING FOR ADULTS WITH RHABDOMYOSARCOMA. IF YOU WOULD LIKE TO TALK, EMAIL ME AT DPJERSEY@AOL.COM

angel2930
Posts: 4
Joined: Mar 2011

Hello I was glad to hear about your grand-daughter doing so well. I hope that is the case still because your post is from 2009. I was wondering if you don't mind me asking where the tumor originated from? What area of the body? My son Bailey (6yrs old)has been diagnosed with embroynal rhabdomyosarcoma of the pelvic region stage III(although the doctors have no idea where it originated from they feel it may have started from behind the abdominal cavity and grew forward)because of the location they could not operate so we are currently going through a year of chemo and two weeks ago finished 6 wks of radiation. I have had little luck with finding cases such as ours, but hope to post our story so that others can share their stories. I hope and pray all is well.

wendybell
Posts: 1
Joined: Jun 2010

on may 14th 2010 our 8 year old daughter was diagnosed with emb rms in her left cheek.....the pterygoid muscle and unfortunately extends up into her cranium. i am guessing if yours was in your cheek it was also the pterygoid muscle where it started. is that correct? what form of treatment were you given. how are doing? hope all is going well for you.

Charl1986
Posts: 2
Joined: Jan 2008

I am a 22 year survivor and have experienced sinus v-tach so suddenly/severely recently, that it was necessary to chemically convert me in the ER. I will be seen Monday by a cardiologist here in Atlanta but my doctors are suspecting an additional electrical pathway that may have been developed in my heart. I underwent 2 full years of chemo from 1986-1988 the first year 3 tretments a week for Stage IV Rhabdomysarcoma. Cytoxin, Vincristine and Dactinomycin were the drugs of choice. I have been told that the chemo may have damaged my cardiac system...any knowledge or experience with this? Please respond with any/all knowledge of or experience regarding long term cardiac effects of Vincristine, Dactinomycin and Cytoxin on the cardiac system.
Thank you,
Charlene

Tom C.
Posts: 11
Joined: Dec 2009

Hi Charlene. It is interesting that you bring up this subject. I am a 36 year survivor of rhabdomyosarcoma. About four years ago I started to get yearly cardiac check-ups after learning that Dactinomycin can cause heart muscle damage if administered in too high of a dosage. Back in the 1970's I had roughly twice as much of this drug as is recommended in today's treatment protocol. Fortunately, I have not suffered any substantial heart muscle damage, although my ejection fraction is slightly lower than other males my age. (This is the force in which the heart operates when pumping blood)

I have yearly echo-cardiograms and a heart MUGA test every other year. I have been advised that cardiologists are looking to see how the heart responds to exercise, meaning does the heart's ejection fraction fall within the "normal" range and more importantly, is the heart enlarged due to prior treatment. I am taking 10mg of Altace daily which is an ace inhibitor and my ejection fraction has actually improved over the last four years.

Are you taking any heart medication? Are you experiencing any fatigue or shortness of breath? It is very wise that you are on top of this as researchers are just finding out what some of the long term effects of chemo are on adult survivors of pediatric cancers.

Good Luck, Tom C.

No Rotel
Posts: 1
Joined: Mar 2011

Tom, Iam so where you are right now. 35 yr survivor, diagnosed at age 15 and here I am today trying to keep up with all the recommendations following the massive amounts of chemo and radiation we received.

Had a 3 day physical at St Judes Long term follow up study, but did not includ a psych eval. I feel so isolated and mis-understood.

Glad Ifound this site. Bless you. You have given wonderful advise!

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